NICE announces roundtable event to ensure implementation of ME/CFS guideline

NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine how it can gain support for the guideline to ensure effective implementation.”

We understand the purpose of the roundtable is to move forward by removing the roadblock to implementation and publish the finalised guideline. We will continue to do everything possible to ensure that it is published without delay in its current form in line with NICE’s established procedures.  

The ME community has been badly affected by the unprecedented delay in publishing the new guideline.  This guideline has been worked on for over three years and has used the best available evidence as well as the lived experience of people with ME/CFS. The delay means that the 2007 guideline continues to be referred to by clinicians. In order to ensure that clinicians can implement the best quality of care, we call upon NICE to immediately add a warning to the previous version of the guideline along with an instruction to use the November 2020 draft guideline until the final guideline is published.  
 
The response to our petition calling on NICE to publish the finalised guideline has been overwhelming. Gill Leng, Chief Executive of NICE responded to #MEAction UK’s petition of over 16,500 names saying: ‘NICE has acknowledged that this petition clearly emphasises the strength of feeling on this important issue’.

Facebook
Twitter
WhatsApp
Email

Latest News

Graphic of yellow canary over black and white photo of a coal mine. Text reads "Canary Corps"

CANARY CORPS – Alison’s Story

Have you registered yet to join us this Wednesday, December 6th at 4pm ET / 1pm PT for a community presentation introducing the Canary Corps program? Ahead of Wednesday’s event we wanted to share with you Alison’s story. Alison Sbrana will be co-presenting this event, and much of the design of Canary Corps has been

Read More »
A rectangle image with a blueish/purple background. The words, "A Year of Exciting Medical Education Achievements" is in white font on the left hand side with the #MEAction logo underneath. On the righthand side is an image of Jaime Seltzer with a step and repeat and poster at the SDMI conference.

A Year of Exciting Medical Education Achievements

A year ago, we were proud to announce that #MEAction and Mayo Clinic Rochester had won a grant for diagnostic improvement, with Ravindra Ganesh, and Stephanie Grach, and I on the grant as co-investigators. Our project, Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Implementation of an Enhanced Education Protocol and Care Process Model

Read More »
a light orange rectangle with a burnt orange outline. in the box, there are orange flag garlands hanging in both top corners with orange confetti in the middle and at the top. in the bottom corners fall leaves. in the middle of the box the word, "OUR BOLDEST THANKS" in burnt orange. the #MEAction logo at the bottom.

#MEAction Shares Our Thanks for Your BOLD ACTIONS

During this time of thankfulness and gratitude, #MEAction staff wants to share what BOLD ACTIONS we are thankful our volunteers and community have taken throughout the year. We thought we could reflect together on all that we have accomplished this year and how every single one of us is important in this powerful community. A

Read More »